Cavernoma

Also called Cavernous malformation, Cavernous angioma

A cluster of abnormal blood vessels in the brain. Most never cause trouble; the ones that bleed do so unpredictably.

What it is

A cluster of abnormal, thin-walled blood vessels in the brain or spinal cord, like a raspberry, which can leak or bleed.

They affect around 1 in 600 people, and most cause no symptoms at all. Many are found incidentally on MRI.

Where they do cause problems, it is through bleeding or through irritating the surrounding brain, causing epilepsy. Seizures are the commonest presentation.

The risk of bleeding depends heavily on whether it has bled before: a cavernoma that has never bled has a low annual risk, while one that has bled has a substantially higher risk of bleeding again, particularly in the first couple of years.

Location matters more than size. A small cavernoma in the brainstem can be far more consequential than a large one in a quiet area.

Around a fifth of people have multiple cavernomas, which usually indicates an inherited familial form, and that has implications for relatives.

Treatment options are watching, treating the seizures, and surgery where the cavernoma is accessible and has bled or causes uncontrolled epilepsy. Radiosurgery is controversial and used selectively.

Signs you might notice

Often none.

Seizures, which are the commonest symptom.

Headaches.

Weakness, numbness, visual problems, difficulty speaking, or balance and coordination problems, depending on location.

Symptoms that come on over hours to days during a bleed, rather than the seconds of a stroke.

999: sudden severe headache, new weakness or numbness, difficulty speaking, visual loss, a first seizure, or reduced consciousness.

Urgent: worsening or new neurological symptoms in somebody with a known cavernoma.

Being pregnant, or taking aspirin or an anticoagulant, are common concerns and should be discussed with the specialist rather than decided on assumption.

How it can affect day-to-day life

Living with a known unruptured cavernoma is an exercise in tolerating uncertainty, and anxiety is a genuine and under-treated part of the condition.

Epilepsy is often the main practical issue, affecting driving, work and independence, and it should be treated properly in its own right.

Driving rules depend on seizures rather than on the cavernoma itself, and should be checked rather than assumed.

Blood thinners are not absolutely forbidden, and the decision balances the reason for them against the bleeding risk; it is a specialist conversation rather than a blanket rule.

Pregnancy and vaginal delivery are generally considered safe for most people with cavernomas, contrary to widespread assumption, and should be discussed rather than avoided.

For the familial form, genetic counselling and screening of relatives is available and is a personal decision.

Supporting someone well

Ask whether it has bled, because that is what drives the risk.

Ask about location and what symptoms would matter for this particular one.

Treat epilepsy properly and ask about driving rules.

Discuss aspirin, anticoagulants, pregnancy and contact sport with the specialist rather than assuming.

Ask about genetic testing if there are multiple cavernomas or a family history.

Get sudden new neurological symptoms assessed as an emergency.

Ask for support with the anxiety of living with it; it is a normal response and it is treatable.

Keep the agreed follow-up, and ask what would trigger a rescan.

Where to get help

A GP practice for referral to neurology or neurosurgery.

999 for sudden neurological symptoms or a first seizure.

Brain and Spine Foundation run a helpline and cover cavernoma.

Epilepsy Action on 0808 800 5050 for the seizures.